The Undone Work of PEPFAR
An open letter to the incoming Global AIDS Coordinator
Dear Coordinator-Designate,
Congratulations on your nomination to be the United States Global AIDS Coordinator. We are writing to pledge our support to you as you take on this crucial leadership position at a transformative moment in the response to HIV/AIDS.
PEPFAR’s Blueprint identifies as a core principle the rapid scale up of proven effective services, and details how wider delivery of evidence-based interventions can accelerate progress towards an AIDS-free generation. This principle represents the central mission for PEPFAR and its partners in the coming years. To truly achieve the AIDS-free generation goal, a primary part of that mission must include vigorous efforts to improve the response to HIV among key populations: gay men, MSM, transgender people, people who inject drugs, and sex workers.
Under the leadership of Ambassador Eric Goosby, PEPFAR made significant advances in key populations programming, policy and research. Guidance documents on evidence-based services for people who inject drugs and MSM were released; the Key Populations Challenge Fund and Implementation Science program were announced; and increasing resources were dedicated to address the epidemic among key populations. The State Department demonstrated global leadership on LGBT rights and affirmed the close connection between human rights progress and public health outcomes.
Now PEPFAR and its partners must build on this foundation and deliver programming at a scale and quality capable of achieving tangible public health outcomes for key populations in the HIV epidemic. We offer the following specific recommendations:
- Base the response to HIV on the latest epidemiology. Key populations represent an increasing share of the epidemic and should be front and center in an effective strategy to control the HIV epidemic. Outside of sub-Saharan Africa, HIV is mostly an epidemic among key populations, and these groups are at an elevated risk of HIV in larger, generalized epidemics as well. Key populations and their sex partners account for 33% of new HIV infections in Kenya and 51% in Nigeria. In many areas of the world, improved surveillance is needed to fully understand the impact of HIV among key populations, but we know that these groups exist in all societies, and a lack of perfect data must not be an excuse for inaction or delay in expanding services.
- Create a Director, Key Populations Programs and Policy position at the Office of the Global AIDS Coordinator. A senior position reporting directly to you is needed to guide strategic approaches to key populations work at the Office of the Global AIDS Coordinator (OGAC), track progress and challenges, and to be a resource to USG teams and partners in the field.
- Establish a task force on HIV and key populations. The new Director, Key Populations Program and Policy should be charged with convening a task force that includes CDC, USAID, NIH, the Global Fund, UNAIDS, WHO, civil society representatives and other critical agencies. The goal of the task force would be to ensure coordinated and strategic efforts to improve HIV-related outcomes for key populations in all countries where PEPFAR is active.
- Greatly expand coverage of evidence-based prevention, treatment, and care services to improve the HIV treatment cascade for all key populations. In many parts of the world key population groups have limited or no access to HIV treatment or the basics of HIV prevention, including condoms, condom-compatible lubricants, and harm reduction services. Expanding access to core effective services among key populations should be a central goal for your office. Achieving this will require vigilance in the development and review of PEPFAR Country Operational Plans (COPs) to ensure that they dedicate appropriate resources to key populations. Annual Program Reporting figures should reflect increased investments in services for key populations. More careful analysis of barriers and facilitators of HIV treatment access is needed among these groups. And reevaluation is needed of current PEPFAR funding trends in which many smaller epidemics, which are overwhelmingly concentrated epidemics among key populations, are sustaining serious cutbacks in PEPFAR support.
- Manage country ownership so that progress on key populations services and rights continues. PEPFAR’s role is evolving as countries rightfully take on more responsibility for planning and managing, and, in some cases, financing HIV-related programming. OGAC must manage these transitions carefully so they do not undermine nascent efforts to improve key populations programming or human rights. Diplomatic leverage must be used to encourage countries to respect the human rights and health needs of key populations groups. The newly announced process for civil society engagement in COPs planning should be used to expand capacity and participation among groups representing key populations’ needs. Given the social and political challenges in many countries, PEPFAR may need to continue to provide core funding for programming to address the epidemic among key populations.
- Launch an interagency-agency research agenda. The Key Populations Implementation Science fund is an important initial step in improving knowledge about service provision for these groups, but an expanded implementation science effort is needed across relevant federal agencies. The goal should be an integrated system of programming and research that identifies priority implementation science questions, identifies best practices and promotes their use and scale-up in the field. Demonstration projects are needed to explore the potential public health impact of highly targeted use of antiviral Pre-Exposure Prophylaxis (PrEP) which has shown efficacy in reducing HIV incidence among key populations groups.
- Invest in community systems. The public health sector needs to partner with community systems of prevention, treatment and care to reach marginalized groups and fill gaps in public services. Based on stigma and discrimination within government systems, many individuals do not trust public health services and hence do not utilize such services. PEPFAR must help partner governments collaborate with trusted community providers and ensure the meaningful inclusion of community voices in decision making.
- Develop meaningful indicators for service delivery and financing. An effective response to HIV among key populations requires a greatly improved system of metrics for services and funding provided. The Institute of Medicine and other commentators have emphasized the need for greater transparency in PEPFAR programming and improved metrics, and this is certainly true for the response among the groups most heavily affected by HIV. PEPFAR should support development of HIV treatment cascades for each key population group in different national settings to track progress and advance accountability for outcomes including undetectable viral load, and lower incidence, morbidity and mortality.
- Be science-based in policy and programming. For expanded services to yield clear impact they must be used strategically and based on the latest research about what is effective. For example, identifying people very early in the course of HIV infection may be critical to make progress in the gay/MSM epidemics. Growing evidence points to the central role of stigma and discrimination in limiting uptake of HIV testing and other services, and the importance of tackling these structural challenges. Program guidance is needed on services for sex workers and trans persons, following such guidance on MSM and people who inject drugs. PEPFAR, the State Department and other USG programs must continue to advocate for evidence based policies, such as harm reduction, and respect for the human rights of all people.
We recognize that in many or most settings achieving gains against the HIV epidemic among key populations will not be easy and will not come immediately. These groups face social and political marginalization and often have grossly limited access to HIV and other health services. Stigma and discrimination make them especially vulnerable to HIV and inhibit access to services. Courageous activists and providers often operate in an atmosphere of threat and danger.
These realities mean that PEPFAR’s role among key populations is challenging and indispensable. As the science indicates, we cannot begin to end the HIV epidemic without doing much better among key affected groups. Improvements in the response among these groups may not yield quick wins or political accolades in the near term. But learning how to address HIV among key populations is the critical next step in an effective and equitable response to the pandemic. The United States must continue to lead on HIV among key populations, and OGAC must challenge itself and its partners to show steady progress in improving health outcomes for these groups. Without that level of commitment there is every likelihood that the most marginalized people will be left devastated by HIV as the world moves on to new challenges.
Thank you for your commitment to tackling AIDS and your willingness to lead US global efforts in this area. We are here to support your work and help in any way we can.
Sincerely,
AIDS Community Research Initiative of America
American Jewish World Service
American Medical Student Association
amfAR, the Foundation for AIDS Research
AVAC: Global Advocacy for HIV Prevention
Endgame Campaign
The Global Forum on MSM & HIV (MSMGF)
The Global Justice Institute
International HIV/AIDS Alliance USA
Johns Hopkins Center for Public Health & Human Rights
Metropolitan Community Churches
Planned Parenthood Federation of America